Over Freakin Whelmed, AGAIN.

24

Comments

  • slickwilly
    slickwilly Member Posts: 334 Member

    You asked about treatment-related trauma...
    I was definitely traumatized by my hospital experience following my debulking surgery. The night after my surgery I was left all night with a call-button on the floor that I could not reach, and a non-functioning catheter, unable to get out of bed because I had 27 staples holding together a fresh 9" belly incision. (They'd check my vitals, make a note on my chart that the catheter didn't seem to be working, then go, as I drifted in and out from my anesthesia.) I stayed one more night, unhooked from my IV and my catheter removed at my insistance, in a CHAIR instead of the bed because I didn't TRUST anyone to come help me go pee and wanted to be personally mobile. Two nights of silent weeping and then I checked myself out of there with no bowel function, projectile vomiting all the way down the hall and out the hospital doors to my poor husband's car.

    I have internal vaginal radiation coming up soon in my treatment regime. I don't know any woman who has had that degradation and humiliation who wasn't traumatized by it and who doesn't weep at the memory.

    And I've witnessed the trauma of people who always get very sick from their chemo, crying as the bags are hung for yet another round.

    Cancer treatment is no walk in the park. It's do-able, but we'd all be fools if our 'game face' was real 24/7. Just knowing that you may very well die, facing that, is pretty darn traumatizing, even though of course people without cancer will also die. But most don't look death in the face like we do, accepting but hopeful.

    Drugs
    I guess if we could afford to send our Doctors on a Bogus Las Vegas trip for a 10 minute seminar we would have better treatment. But we don't have the money to compete with the drug companies. I can't even count how many times I have been at my GP's office when a drug company rep has walked in with his large sample bag full of free offers. Nothing is free! Nobody offered me free chemo at $16,500 each trip. Or Radiation at $1500,00 each day. I could of stuck my head in the microwave I guess. We proubly know more about micorwave exposure to the head than we do the side effects of cancer treatment. Just look at all the warning labels. I didn't see one warning lable on my chemo bags. Don't get me wrong here. I am glad I was saved by modern science. But after so many years of this world dealing with cancer I sometimes feel we are in the stone age. They can send us off to a psych that does not have a clue about what we are dealing with and they feel better. The world will change when I can put wires on my head that are attached to my doctor and he can feel what I am going through. He would proubly say "holy crap, how can you live like this". Only because I know God has a bigger plan for me and I can only hope it does not involve the medical profession. I will get down off my stump now. Slickwilly
  • Pnktopaz10
    Pnktopaz10 Member Posts: 56

    Drugs
    I guess if we could afford to send our Doctors on a Bogus Las Vegas trip for a 10 minute seminar we would have better treatment. But we don't have the money to compete with the drug companies. I can't even count how many times I have been at my GP's office when a drug company rep has walked in with his large sample bag full of free offers. Nothing is free! Nobody offered me free chemo at $16,500 each trip. Or Radiation at $1500,00 each day. I could of stuck my head in the microwave I guess. We proubly know more about micorwave exposure to the head than we do the side effects of cancer treatment. Just look at all the warning labels. I didn't see one warning lable on my chemo bags. Don't get me wrong here. I am glad I was saved by modern science. But after so many years of this world dealing with cancer I sometimes feel we are in the stone age. They can send us off to a psych that does not have a clue about what we are dealing with and they feel better. The world will change when I can put wires on my head that are attached to my doctor and he can feel what I am going through. He would proubly say "holy crap, how can you live like this". Only because I know God has a bigger plan for me and I can only hope it does not involve the medical profession. I will get down off my stump now. Slickwilly

    Hi
    Hi Slickwilly
    You are so right about the doctors! You would think that as much cancer as the specialists see every day that there would have more knowledge and empathy. It is hard enough when your friends and family do not understand but it is frustrating as all get out when the doctor does not know more or understand. When I was going through one of rough parts I was asked if I wanted to see a psychiatrist.
    I said not~ I am dealing with cancer and unless you send me to a dr who has had cancer there is nothing to talk about. That was the end of that conversation. What I have learned is that even if the dr tells you what to possibly expect, it is not real until you experience it. It is just a bunch of words. I am cancer free but not side-effect free. It is something that I can live with and I would have still gone through chemo and radiation but it certainly is not for the faint hearted. This too shall pass is my mantra~something that I might say to myself many times during a bad day. I say stay on your stump and let the medical community know what is needed. Perhaps we could get a grass roots effort going about education for doctors and nurses and everyone else that comes in contact with cancer patients. I have no idea how to do it but I now it needs to get done. Hugs to you Slickwilly! Pnktopaz
  • green50
    green50 Member Posts: 312

    Hi
    Hi Slickwilly
    You are so right about the doctors! You would think that as much cancer as the specialists see every day that there would have more knowledge and empathy. It is hard enough when your friends and family do not understand but it is frustrating as all get out when the doctor does not know more or understand. When I was going through one of rough parts I was asked if I wanted to see a psychiatrist.
    I said not~ I am dealing with cancer and unless you send me to a dr who has had cancer there is nothing to talk about. That was the end of that conversation. What I have learned is that even if the dr tells you what to possibly expect, it is not real until you experience it. It is just a bunch of words. I am cancer free but not side-effect free. It is something that I can live with and I would have still gone through chemo and radiation but it certainly is not for the faint hearted. This too shall pass is my mantra~something that I might say to myself many times during a bad day. I say stay on your stump and let the medical community know what is needed. Perhaps we could get a grass roots effort going about education for doctors and nurses and everyone else that comes in contact with cancer patients. I have no idea how to do it but I now it needs to get done. Hugs to you Slickwilly! Pnktopaz

    Ok Nutrition Again FYI
    I talked to nurse giving me chemo and she said my sugar was a little high and that yes sugar does increase the cancer. I noticed I stay away as much as possible, but I have been eating my nephews homemade cookies and brownies and my sugar is high and my count is the highest its been. when I went on low carbs my count got better and sugar down so I am sure it does do something bad. My count is highest its been ca125 is 18000. 0-35 is normal or under a 100 for some women. anyway I said how about sugar substitute she said its chemical and thats why there is so much cancer because foods have a lot of chemicals now days. Same ole eat fruits veggies and lean meats. So I will try to not eat sugar and buy the wheat pasta. She did say knowing I like dark chocolate she said thats what would be best for a sweet tooth. DArker has less sugar and the cocoa beans are good for you. Guess we all know its just bad eating habits. Had my second chemo today and tomorrow my third then three weeks off then chemo again. Dr. said its hard to stay away from foods with chemicals and of course chemicals in the air too. But we do what we do and whatever. No, sugar does not cause cancer it just may increase it. so I will see what happens cutting down. Of course our dear steroids cause sugar to go up so there you are. Just a little FYI for more wonderful info. Yes eating right and exercise is best even tho even some that do still get cancer which may be a gene thing or whatever your body does or does not tolerate but I am going to try to do better my tumors are still small but got to get the cancer count down too because thats the fluids that can cause the tumors. HOpe I haven't bored you with what you might already know. Head steroids and mind going a hundred miles a minute LOL
    Prayers and Hugs
    Sandy
  • slickwilly
    slickwilly Member Posts: 334 Member
    green50 said:

    Ok Nutrition Again FYI
    I talked to nurse giving me chemo and she said my sugar was a little high and that yes sugar does increase the cancer. I noticed I stay away as much as possible, but I have been eating my nephews homemade cookies and brownies and my sugar is high and my count is the highest its been. when I went on low carbs my count got better and sugar down so I am sure it does do something bad. My count is highest its been ca125 is 18000. 0-35 is normal or under a 100 for some women. anyway I said how about sugar substitute she said its chemical and thats why there is so much cancer because foods have a lot of chemicals now days. Same ole eat fruits veggies and lean meats. So I will try to not eat sugar and buy the wheat pasta. She did say knowing I like dark chocolate she said thats what would be best for a sweet tooth. DArker has less sugar and the cocoa beans are good for you. Guess we all know its just bad eating habits. Had my second chemo today and tomorrow my third then three weeks off then chemo again. Dr. said its hard to stay away from foods with chemicals and of course chemicals in the air too. But we do what we do and whatever. No, sugar does not cause cancer it just may increase it. so I will see what happens cutting down. Of course our dear steroids cause sugar to go up so there you are. Just a little FYI for more wonderful info. Yes eating right and exercise is best even tho even some that do still get cancer which may be a gene thing or whatever your body does or does not tolerate but I am going to try to do better my tumors are still small but got to get the cancer count down too because thats the fluids that can cause the tumors. HOpe I haven't bored you with what you might already know. Head steroids and mind going a hundred miles a minute LOL
    Prayers and Hugs
    Sandy

    Nutrition
    Hi Sandy. I figure your awake as your on steroids. I would not sleep for the first three nights after chemo. I also had the sugar problem during my chemo. I had to switch from my normal pasta diet to grilling chicken breast on my foreman grill. A little lemon pepper helps. Or I would grill the chicken and add it to a stir fry with veggies and rice. I also cooked liver on my outside grill to get my iron up. For a treat that was fairly healthy I melted down almond bark by putting a pot inside a pot of water. Then I added unsalted peanuts and coconut. Pour it onto wax paper and put it in the fridge to set up. Yes Slickwilly can cook. I also do dishes, laundry, make the beds and clean the carpets. If the medical bills keep coming I will put myself up for sale. Bless you all Slickwilly
  • blueroses
    blueroses Member Posts: 524

    Nutrition
    Hi Sandy. I figure your awake as your on steroids. I would not sleep for the first three nights after chemo. I also had the sugar problem during my chemo. I had to switch from my normal pasta diet to grilling chicken breast on my foreman grill. A little lemon pepper helps. Or I would grill the chicken and add it to a stir fry with veggies and rice. I also cooked liver on my outside grill to get my iron up. For a treat that was fairly healthy I melted down almond bark by putting a pot inside a pot of water. Then I added unsalted peanuts and coconut. Pour it onto wax paper and put it in the fridge to set up. Yes Slickwilly can cook. I also do dishes, laundry, make the beds and clean the carpets. If the medical bills keep coming I will put myself up for sale. Bless you all Slickwilly

    But do you do windows Slick? lol
    Well aren't you just the Man of the Year. lol. Nice to see a man do his share around the house, good boy. lol. I think not sleeping after chemo is pretty common I think, I don't remember much about all my treatment with chemo and radiation except for a few trauma scenes but I do remember being terribly sleep deprived and I had two young children at home and a scattered spouse so I was still doing the majority of the parenting then as well. Sure isn't easy on no sleep for weeks at a time. I had prednisone too at the end of each treatment day which also contributed to the sleeplessness. They found out finally, a nurse figured it out, part of the reason for my 'no sleep' was that the chemo had put me into premature menopause so that didn't help the sleep patterns either. I remember too that when I was first diagnosed I drove myself near crazy with all the info on what to eat and what not to eat but in later years I got into a more reasonable space with it all and just try to eat as well as I can. If you worry too much about what to eat and what not to eat then the worry becomes yet another issue so balance is the key, to me anywho. Balance is always the key in everything I think and I have heard may well be the reason for cancer at the root of it all, imbalnce in something or many things in our lives - excess. Thought that was an interesting theory. Hope this comment finds both you Sandy, and you Slickster having a good day today. Hugs, Blueroses.
  • blueroses
    blueroses Member Posts: 524

    Hi
    Hi Slickwilly
    You are so right about the doctors! You would think that as much cancer as the specialists see every day that there would have more knowledge and empathy. It is hard enough when your friends and family do not understand but it is frustrating as all get out when the doctor does not know more or understand. When I was going through one of rough parts I was asked if I wanted to see a psychiatrist.
    I said not~ I am dealing with cancer and unless you send me to a dr who has had cancer there is nothing to talk about. That was the end of that conversation. What I have learned is that even if the dr tells you what to possibly expect, it is not real until you experience it. It is just a bunch of words. I am cancer free but not side-effect free. It is something that I can live with and I would have still gone through chemo and radiation but it certainly is not for the faint hearted. This too shall pass is my mantra~something that I might say to myself many times during a bad day. I say stay on your stump and let the medical community know what is needed. Perhaps we could get a grass roots effort going about education for doctors and nurses and everyone else that comes in contact with cancer patients. I have no idea how to do it but I now it needs to get done. Hugs to you Slickwilly! Pnktopaz

    Oh Pink you are so right there.
    There is alot of work to be done by survivors to educate docs in many aspects of cancer,emotional issues at the top of the list, in my humble opinion. I think that if we each can find just thatlittle bit of extra energy when we go to see our docs to raise some diaglogue as to what we need as survivors then I think gradually the medical community will change in how it deals with us and what more they can offer, in the area of support especially. Today I am going to see one of my cardiologists with new symptoms I am having and my confusion as to anesthesia in my 2 surgeries coming up and will take with me a copy of that article Linda was talking about in another thread dealing with severe stress and long term survivors. Some docs are more open to this than others and some just roll their eyes at anything from the internet but if you present it properly most will listen. Sometimes in the long list of questions we have about ourselves we just don't have the energy to bring up issues we have as survivors but if we all only raise the issue once then think how that might cummulatively make a difference?

    Oh Pink I so agree too with your phrase about cancer treatment not being for the faint of heart, in exchange for being given our life back there is indeed a big price to pay in after effects for a great many of us. Have a good day Pink. Blessings, Blueroses.
  • blueroses
    blueroses Member Posts: 524
    tasha_111 said:

    Chemo Brain
    Hi. Not one of my supposed health care team mentioned chemo brain to me before treatment, and no one has acknowledged it since. If it hadn't been for my Peer Support Lady who talks to me on the phone once a fortnight, I would have seriously considered the fact that I was deranged. I's nice to meet others here who have had some experience of this and actually admit it DOES exist!.

    Thanks J xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

    Hey Tash
    I think it's few and far between who, in the medical profession, will today use the words chemo brain but it's coming because they are now totally admitting to certain damage situations from cancer treatment. Only 2 years ago did my cardiologist use the phrase 'adriamycin induced cardiomyopathy' which means chemo damaged my heart (that specific drug - adriamycin). I nearly fell off my chair as years before when I first started having other health problems, including heart ones, after treatments my bone marrow transplant suggested I see a shrink. I was feeling sooooooooooo horrible that I broke out in tears, called me some choice words, and went running out of the examining room. No idea where I got the strength to do that but I felt good that I got it out, it was patient abuse as far as I was concerned. Now that was 18 years ago but from some postings I have read, alot of that type of thinking by some docs still goes on, grrrrr. It's getting better though as we long term survivors press on, there are so many of us now (which is encouraging) who are having so many like symptoms, they can't ignore it all any longer. Their is indeed strength in numbers. Docs today do know that treatment can cause cognitive issues, it's a start. Hugs Tash, Blueroses.
  • blueroses
    blueroses Member Posts: 524

    You asked about treatment-related trauma...
    I was definitely traumatized by my hospital experience following my debulking surgery. The night after my surgery I was left all night with a call-button on the floor that I could not reach, and a non-functioning catheter, unable to get out of bed because I had 27 staples holding together a fresh 9" belly incision. (They'd check my vitals, make a note on my chart that the catheter didn't seem to be working, then go, as I drifted in and out from my anesthesia.) I stayed one more night, unhooked from my IV and my catheter removed at my insistance, in a CHAIR instead of the bed because I didn't TRUST anyone to come help me go pee and wanted to be personally mobile. Two nights of silent weeping and then I checked myself out of there with no bowel function, projectile vomiting all the way down the hall and out the hospital doors to my poor husband's car.

    I have internal vaginal radiation coming up soon in my treatment regime. I don't know any woman who has had that degradation and humiliation who wasn't traumatized by it and who doesn't weep at the memory.

    And I've witnessed the trauma of people who always get very sick from their chemo, crying as the bags are hung for yet another round.

    Cancer treatment is no walk in the park. It's do-able, but we'd all be fools if our 'game face' was real 24/7. Just knowing that you may very well die, facing that, is pretty darn traumatizing, even though of course people without cancer will also die. But most don't look death in the face like we do, accepting but hopeful.

    I'm so sorry you had to deal with all of that
    I read your post Linda and boy did it sound familiar. I too suffer from many trauma scenes experienced in treatment as I am sure most did to some extent. Poor care from some nurses left me feeling so vulnerable at night especially when I was in hospital with treatment but I always seemed to rally enough to demand another nurse put on my case or make sure that whatever wasn't being done right was corrected in some other way. I really felt God's presence in the hospital as when I was feeling the most vulnerable with no energy and much pain I would get these bursts of strength, just for enough time to deal with the emotional negatives that I had to. It was really amazing.

    I remember one incident where a nurse on duty with my case one evening consistantly kept putting off giving me my pain meds on time and to boot she was so sloppy with my care that during the night I awoke to find my IV had gone interstitial (meaning it came out of the vein and the fluid was pooling under my skin). That smarts I can tell you. I rang the bell, after making many failed attempts throughout the night to get her to check on me more, and demanded that a new nurse be put on my watch. They argued but I got a new nurse and I drifted off to sleep after testing her out for better care (which she passed) knowing that I would be looked after properly now. Again I got that shot of energy from above to help me deal with the shoddy situation at that time. I have over 2 dozen trauma scenes related to my cancer treatment, I'm sure many of you have the same over the years. It's a real shame that this area of treatment is not yet recognized as it well should be. I just want to say here that I had mostly fabulous nurses, this one was a negative exception, but truly they did more for me than all my doctors put together I think in getting my care to where it needed to be with the docs in many cases. Nurses are so critical to our care as most of you well realize, they are so undervalued by the medical community from what I have seen. Take care, Blueroses.
  • blueroses
    blueroses Member Posts: 524

    Chemo Brain
    I have an excellent oncologist who understands chemo brain~in fact she told me I had it~ but she does dismiss it. After reading the posts I think that she dismisses it because she does not have any answers about what to do about it. I had no idea about the negative impact of chemo and radiation. I do sort of remember someone telling me a few things but at the time it meant nothing. However, I find that there are positive benefits to chemo brain. When my hubby and I get into a dispute about something~I forget about it quickly and sometimes do not remember it for a few days. LOL. Reading books has always been one of my joys and now I can read books I read before because I do not remember them! Think of the money I am saving! I can no longer multi task which leads to many funny situations around the house~where I find things that I have started to do and never finished. Life is simpler since I retired and it took having cancer to slow me down and put things in the proper perspective. I am grateful for that. The other side effects can be dealt with~sometimes frustrating sometimes rewarding~like the weight I lost~. I do think that the medical community could be more responsive to cancer survivors and the side effects. To that end this is my 4th year o being a team captain in our Relay for Life. I just wish I could do more.
    Hugs to all Pnktopaz10

    The After Effects Issue
    Sheesh I could write a book about this subject and in dribs and drabs on this site I have talked about it a great deal for obvious reasons but what I wanted to add here is that there is a real problem with how it is perceived to the docs, when we bring up the subject of our after effects that is. For many of them, as soon as we tell them about a symptom and that we feel it could be due to our cancer treatments, many feel we are using our treatments as excuses for symptoms that can also be caused by regular health problems others have who don't have cancer. Know what I mean? Age is a big one. If you say to your doc that you are having cognitive issues or feel you are getting much more forgetful, and I find this is a bigger problem from what I have heard from women in particular, they will say 'well you aren't getting any younger", thank you doc that helped. lol. I am not saying there isn't most likely SOME element of truth to that in some cases but most of us can feel when a symptom is not a more common kind of symptom, we just KNOW something is not right and is most likely related to recent treatments. I don't know if I am making myself clear here, hope so. I have only had one cup of coffee so far, lol.

    I don't know how to deal with this type of issue more effectively, there are many books written on How to Talk To Your Doctor - it's become an art now it seems, lol. However I have found that if you have your notes and thoughts in order when you go in to see your docs and you don't act like a know it all to them about your after effects - perhaps take some well respected material with you for them to read at their leisure on the issue (from a medical facility well respected is the key - like Dana Farber etc.) and are polite about it all most will usually listen if you keep it brief.
    I need more coffee. lol. Blessings, Blueroses.
  • Pnktopaz10
    Pnktopaz10 Member Posts: 56
    blueroses said:

    The After Effects Issue
    Sheesh I could write a book about this subject and in dribs and drabs on this site I have talked about it a great deal for obvious reasons but what I wanted to add here is that there is a real problem with how it is perceived to the docs, when we bring up the subject of our after effects that is. For many of them, as soon as we tell them about a symptom and that we feel it could be due to our cancer treatments, many feel we are using our treatments as excuses for symptoms that can also be caused by regular health problems others have who don't have cancer. Know what I mean? Age is a big one. If you say to your doc that you are having cognitive issues or feel you are getting much more forgetful, and I find this is a bigger problem from what I have heard from women in particular, they will say 'well you aren't getting any younger", thank you doc that helped. lol. I am not saying there isn't most likely SOME element of truth to that in some cases but most of us can feel when a symptom is not a more common kind of symptom, we just KNOW something is not right and is most likely related to recent treatments. I don't know if I am making myself clear here, hope so. I have only had one cup of coffee so far, lol.

    I don't know how to deal with this type of issue more effectively, there are many books written on How to Talk To Your Doctor - it's become an art now it seems, lol. However I have found that if you have your notes and thoughts in order when you go in to see your docs and you don't act like a know it all to them about your after effects - perhaps take some well respected material with you for them to read at their leisure on the issue (from a medical facility well respected is the key - like Dana Farber etc.) and are polite about it all most will usually listen if you keep it brief.
    I need more coffee. lol. Blessings, Blueroses.

    The after effects issue
    Good morning all. Blueroses you make a very good point about having notes and thoughts in order before speaking with the doctor. While I was going through chemo hubby would have notes of things to ask~mostly because I could not remember a thing! Chemo brain, prednisone induced insomnia and agitation were biggies. What I am finding is that not only do we need to educate our doctors but our family and friends as well. People think that once you have finished the treatment you should be fine. We all know that this is not the case, which is one of the reasons that this board, and all the people on it are so important to me. I do not really like to talk much about the aftereffects of cancer with my friends because they just do not understand. Good days, bad days and those in between. Ah well, I too have only had one cup of coffee Blueroses... hugs, Pnktopaz
  • slickwilly
    slickwilly Member Posts: 334 Member

    The after effects issue
    Good morning all. Blueroses you make a very good point about having notes and thoughts in order before speaking with the doctor. While I was going through chemo hubby would have notes of things to ask~mostly because I could not remember a thing! Chemo brain, prednisone induced insomnia and agitation were biggies. What I am finding is that not only do we need to educate our doctors but our family and friends as well. People think that once you have finished the treatment you should be fine. We all know that this is not the case, which is one of the reasons that this board, and all the people on it are so important to me. I do not really like to talk much about the aftereffects of cancer with my friends because they just do not understand. Good days, bad days and those in between. Ah well, I too have only had one cup of coffee Blueroses... hugs, Pnktopaz

    Another thought
    We have all delt with many problems during cancer or while helping others with cancer. And I was quite lucky in many ways as I had insurance, sick leave ect. But the fact is most people in this country are stretched to the limit with finances. Even with savings and being ahead of the game a major illness will drain a family fast. I have to wonder how many people living on the street once had a family and lost it to a major illness. Let alone the Veterans that come back from war disabled or with PTSD and quickly find their lives ruined. I am not a supporter of big Government by any means. But it seems to me that if each person that has a home, vehicle, credit card or any type of loan paid $5.00 a year for each item into a long term illness fund life might be a bit easier. The fund would not pay off the debt but only the interest each month. The creditors would be put on hold once the illness is verified. As only the interest is covered there would not be as much abuse as the debt would still be there after you have recovered or been put on disability. Imagine being able to deal with cancer without the phone ringing off the hook. Not having to give up treatment so your family can collect your insurance. I have seem far too much of this and it breaks my heart. It might not be the perfect answer but its something to think about. Bless you all Slickwilly
  • green50
    green50 Member Posts: 312

    Another thought
    We have all delt with many problems during cancer or while helping others with cancer. And I was quite lucky in many ways as I had insurance, sick leave ect. But the fact is most people in this country are stretched to the limit with finances. Even with savings and being ahead of the game a major illness will drain a family fast. I have to wonder how many people living on the street once had a family and lost it to a major illness. Let alone the Veterans that come back from war disabled or with PTSD and quickly find their lives ruined. I am not a supporter of big Government by any means. But it seems to me that if each person that has a home, vehicle, credit card or any type of loan paid $5.00 a year for each item into a long term illness fund life might be a bit easier. The fund would not pay off the debt but only the interest each month. The creditors would be put on hold once the illness is verified. As only the interest is covered there would not be as much abuse as the debt would still be there after you have recovered or been put on disability. Imagine being able to deal with cancer without the phone ringing off the hook. Not having to give up treatment so your family can collect your insurance. I have seem far too much of this and it breaks my heart. It might not be the perfect answer but its something to think about. Bless you all Slickwilly

    Amen Slickwilly
    My brother was a viet nam vet and just finally got a small disability check after what 35 years for his loss of hearing and depression and whatever else. But yes if we could just do the fund thing then maybe I wouldn't have to take more then half of my disability check and put it on medicaid spend down of over 700 dollars. And I could take the chemo pill instead of the drip in IV. I have the highest count and I have been eating sugar so even tho it doesn't cause cancer it increases the tumors and fluids so I am going to try and live without it so much. Thanks for the ideas on the meat. I am going to get fresh fruits and veggies from Amish and go to meat markets for meat instead of dyed meat at grocery store. Try to eat better and see if that helps count to go down. Bad habits are hard to quit. That liver sounds good on grill. I have high cholestrol but could eat it once or twice a year I suppose. I use to lightly fry it then cook it to make a broth gravy with onions. The chicken my mom makes is no skin of course but you roll the skinless chicken in egg and milk then crunch up some cornflakes real fine and roll it in that and bake it and its like fried chicken but no oil or skin. Just a little FYI. I don't usually talk alot or type alot but steroids are like making me like energizer thoughts, even if I am not too clear on thinking. Well got to go get my martini then I will have 3 weeks off then go back. All of you take care
    Prayers and Hugs
    Sandy
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    green50 said:

    Amen Slickwilly
    My brother was a viet nam vet and just finally got a small disability check after what 35 years for his loss of hearing and depression and whatever else. But yes if we could just do the fund thing then maybe I wouldn't have to take more then half of my disability check and put it on medicaid spend down of over 700 dollars. And I could take the chemo pill instead of the drip in IV. I have the highest count and I have been eating sugar so even tho it doesn't cause cancer it increases the tumors and fluids so I am going to try and live without it so much. Thanks for the ideas on the meat. I am going to get fresh fruits and veggies from Amish and go to meat markets for meat instead of dyed meat at grocery store. Try to eat better and see if that helps count to go down. Bad habits are hard to quit. That liver sounds good on grill. I have high cholestrol but could eat it once or twice a year I suppose. I use to lightly fry it then cook it to make a broth gravy with onions. The chicken my mom makes is no skin of course but you roll the skinless chicken in egg and milk then crunch up some cornflakes real fine and roll it in that and bake it and its like fried chicken but no oil or skin. Just a little FYI. I don't usually talk alot or type alot but steroids are like making me like energizer thoughts, even if I am not too clear on thinking. Well got to go get my martini then I will have 3 weeks off then go back. All of you take care
    Prayers and Hugs
    Sandy

    Hey Sandy: We call that sleepless steroid-high "Hamster Days"
    Someone else on one of these Discussion Boards coined the term "Hamster Days" for those pre-chemo steroids-induced sleepless nights and days of artificial energy. I get that with every single chemo round, and I DO feel like a nocturnal creature running endlessly through the night on my little wheel going nowhere. The steroids also make me unusually aggressive in conversations, interrupting people and spouting out my opinions tactlessly, in an obnoxious way that isn't like me the rest of the time. I try and use the fake energy of my Hamster Days to clean my dirty home before my white-count drops again, making living in my own untidiness (AKA squallor) a health hazard for my immune-deficient body.

    Regarding nutrition: Life-long, I have always eaten a high-fiber, whole-grain, organic veggie diet, and so being on my 'cancer diet' isn't that much different except that I now drink prune juice in the evening instead of having a glass of wine (boo!) and order tomato juice is restaurants instead of an iced tea. But the real change I see is how UNFORGIVING my body is now for any indulgence in my diet. Like when the grandkids are here and we go out for donuts for breakfast (instead of my regular bowl of Fiber One) and for hamburgers and ice cream for lunch (instead of my regular daily spinach salad), I now experience constipation immediately for these diet transgressions. A single glass of wine for a special occasion makes me feel as hung over as if I'd been on a binger. The fact that I got cancer even though I have never smoked, have never been overweight, and always eaten right and gone to the gym daily has really thrown my poor husband for a loop. He has totally given up on the high fiber/low fat diet he adopted when he turned 50, saying "What good does it do? Look at what happened to you even though you were a poster child for clean living." I am working on him, because I NEED him to be healthy for me, but I can see where his bad attitude is coming from.

    My nutritionist recommended eating live-culture yogurt every day while in treatment to help replenish the good bacteria in your body that the chemo is killing off, and a minimum of 5 servings of fruits and vegetables daily, and to stick to unrefined food. I am an organic gardener in the summer and looking forward to growing my own spinach and tomatoes again. It costs a LOT MORE to eat right.
  • Pnktopaz10
    Pnktopaz10 Member Posts: 56

    Hey Sandy: We call that sleepless steroid-high "Hamster Days"
    Someone else on one of these Discussion Boards coined the term "Hamster Days" for those pre-chemo steroids-induced sleepless nights and days of artificial energy. I get that with every single chemo round, and I DO feel like a nocturnal creature running endlessly through the night on my little wheel going nowhere. The steroids also make me unusually aggressive in conversations, interrupting people and spouting out my opinions tactlessly, in an obnoxious way that isn't like me the rest of the time. I try and use the fake energy of my Hamster Days to clean my dirty home before my white-count drops again, making living in my own untidiness (AKA squallor) a health hazard for my immune-deficient body.

    Regarding nutrition: Life-long, I have always eaten a high-fiber, whole-grain, organic veggie diet, and so being on my 'cancer diet' isn't that much different except that I now drink prune juice in the evening instead of having a glass of wine (boo!) and order tomato juice is restaurants instead of an iced tea. But the real change I see is how UNFORGIVING my body is now for any indulgence in my diet. Like when the grandkids are here and we go out for donuts for breakfast (instead of my regular bowl of Fiber One) and for hamburgers and ice cream for lunch (instead of my regular daily spinach salad), I now experience constipation immediately for these diet transgressions. A single glass of wine for a special occasion makes me feel as hung over as if I'd been on a binger. The fact that I got cancer even though I have never smoked, have never been overweight, and always eaten right and gone to the gym daily has really thrown my poor husband for a loop. He has totally given up on the high fiber/low fat diet he adopted when he turned 50, saying "What good does it do? Look at what happened to you even though you were a poster child for clean living." I am working on him, because I NEED him to be healthy for me, but I can see where his bad attitude is coming from.

    My nutritionist recommended eating live-culture yogurt every day while in treatment to help replenish the good bacteria in your body that the chemo is killing off, and a minimum of 5 servings of fruits and vegetables daily, and to stick to unrefined food. I am an organic gardener in the summer and looking forward to growing my own spinach and tomatoes again. It costs a LOT MORE to eat right.

    Good Idea Slick
    I love your idea Slick. I would be the first to sign up and give the $. I too am fortunate that I have insurance and that I have enough sick and vacation time to be paid until the end of the year. I then retired. I worked about 1/2 hour from home and the chemo brain get in the way of driving and concentrating once I got there. After working over 30 years it was time to move on to something different. However, there are too many people who do not have insurance and I truly do not know how they do it. I look at the bill statements that come in and yikes!
  • blueroses
    blueroses Member Posts: 524

    The after effects issue
    Good morning all. Blueroses you make a very good point about having notes and thoughts in order before speaking with the doctor. While I was going through chemo hubby would have notes of things to ask~mostly because I could not remember a thing! Chemo brain, prednisone induced insomnia and agitation were biggies. What I am finding is that not only do we need to educate our doctors but our family and friends as well. People think that once you have finished the treatment you should be fine. We all know that this is not the case, which is one of the reasons that this board, and all the people on it are so important to me. I do not really like to talk much about the aftereffects of cancer with my friends because they just do not understand. Good days, bad days and those in between. Ah well, I too have only had one cup of coffee Blueroses... hugs, Pnktopaz

    Hey Pink
    Just got back from one of my cardiologists to check on his thoughts on two anesthetics close together for my surgeries and again said it would be okay, 2 weeks apart is fine. Hmmm. Of course last time he said it was okay for my heart then I get outside the operating room and the anesthesiologist comes out and says no way he will put me under with all my health issues. Oh man shoot me now. So I got all dressed up for this appointment and came home with the same answer he gave me before despite what I said about the anesthesiologist outside the O.R. Seriously, shoot me now. Sigh. So I will go to the pre op appointment for the kidney stone dragging out and see if they have more smarts in there. Sheeesh. Got a call today and 2 more procedures have been booked. This is sure quite a run of docs and procedures, even for me. I took my sheet of paper with notes on it, got it all asked but when I was waiting for my ride forgot to tell him why I brought in a copy of the article on stress and long term survivors, sigh. Ah, he can figure it out. One day at a time, one foot in front of the other and try not to trip. Yowza. Hugs, Blueroses.
  • blueroses
    blueroses Member Posts: 524
    green50 said:

    Amen Slickwilly
    My brother was a viet nam vet and just finally got a small disability check after what 35 years for his loss of hearing and depression and whatever else. But yes if we could just do the fund thing then maybe I wouldn't have to take more then half of my disability check and put it on medicaid spend down of over 700 dollars. And I could take the chemo pill instead of the drip in IV. I have the highest count and I have been eating sugar so even tho it doesn't cause cancer it increases the tumors and fluids so I am going to try and live without it so much. Thanks for the ideas on the meat. I am going to get fresh fruits and veggies from Amish and go to meat markets for meat instead of dyed meat at grocery store. Try to eat better and see if that helps count to go down. Bad habits are hard to quit. That liver sounds good on grill. I have high cholestrol but could eat it once or twice a year I suppose. I use to lightly fry it then cook it to make a broth gravy with onions. The chicken my mom makes is no skin of course but you roll the skinless chicken in egg and milk then crunch up some cornflakes real fine and roll it in that and bake it and its like fried chicken but no oil or skin. Just a little FYI. I don't usually talk alot or type alot but steroids are like making me like energizer thoughts, even if I am not too clear on thinking. Well got to go get my martini then I will have 3 weeks off then go back. All of you take care
    Prayers and Hugs
    Sandy

    Hi Sandy
    Sandy does your brother suffer flashbacks from Vietnam? Is he getting treatment for it or did he?
    Just thought I would pass along some info if you wanted it on Vietnam vets and flashbacks. Hugs, Blueroses.
  • Pnktopaz10
    Pnktopaz10 Member Posts: 56
    blueroses said:

    Hey Pink
    Just got back from one of my cardiologists to check on his thoughts on two anesthetics close together for my surgeries and again said it would be okay, 2 weeks apart is fine. Hmmm. Of course last time he said it was okay for my heart then I get outside the operating room and the anesthesiologist comes out and says no way he will put me under with all my health issues. Oh man shoot me now. So I got all dressed up for this appointment and came home with the same answer he gave me before despite what I said about the anesthesiologist outside the O.R. Seriously, shoot me now. Sigh. So I will go to the pre op appointment for the kidney stone dragging out and see if they have more smarts in there. Sheeesh. Got a call today and 2 more procedures have been booked. This is sure quite a run of docs and procedures, even for me. I took my sheet of paper with notes on it, got it all asked but when I was waiting for my ride forgot to tell him why I brought in a copy of the article on stress and long term survivors, sigh. Ah, he can figure it out. One day at a time, one foot in front of the other and try not to trip. Yowza. Hugs, Blueroses.

    Hey Blue
    Yikes! What else can I say. I wish I could be there with you and hold your hand or tell you funny jokes when you are going through it all.
    Am glad that you are getting the kidney stone taken out. I understand that those are very painful and can lead to even more trouble. The article will keep until the next time. forgetting just postpones it for a little while. here is a story for you. Really cold outside and I could not find my gloves. Searched everywhere. They are pink (go figure) and cannot be over looked. So off I go to the store to get new ones~fussing the whole way there. Went to the check out line to pay for them~reached in my purse~ up the gloves were in there. The one place I did not look! Hope that this brings a smile to your face. Hugs, Pnktopaz
  • Dreamdove
    Dreamdove Member Posts: 175 Member

    Hey Sandy: We call that sleepless steroid-high "Hamster Days"
    Someone else on one of these Discussion Boards coined the term "Hamster Days" for those pre-chemo steroids-induced sleepless nights and days of artificial energy. I get that with every single chemo round, and I DO feel like a nocturnal creature running endlessly through the night on my little wheel going nowhere. The steroids also make me unusually aggressive in conversations, interrupting people and spouting out my opinions tactlessly, in an obnoxious way that isn't like me the rest of the time. I try and use the fake energy of my Hamster Days to clean my dirty home before my white-count drops again, making living in my own untidiness (AKA squallor) a health hazard for my immune-deficient body.

    Regarding nutrition: Life-long, I have always eaten a high-fiber, whole-grain, organic veggie diet, and so being on my 'cancer diet' isn't that much different except that I now drink prune juice in the evening instead of having a glass of wine (boo!) and order tomato juice is restaurants instead of an iced tea. But the real change I see is how UNFORGIVING my body is now for any indulgence in my diet. Like when the grandkids are here and we go out for donuts for breakfast (instead of my regular bowl of Fiber One) and for hamburgers and ice cream for lunch (instead of my regular daily spinach salad), I now experience constipation immediately for these diet transgressions. A single glass of wine for a special occasion makes me feel as hung over as if I'd been on a binger. The fact that I got cancer even though I have never smoked, have never been overweight, and always eaten right and gone to the gym daily has really thrown my poor husband for a loop. He has totally given up on the high fiber/low fat diet he adopted when he turned 50, saying "What good does it do? Look at what happened to you even though you were a poster child for clean living." I am working on him, because I NEED him to be healthy for me, but I can see where his bad attitude is coming from.

    My nutritionist recommended eating live-culture yogurt every day while in treatment to help replenish the good bacteria in your body that the chemo is killing off, and a minimum of 5 servings of fruits and vegetables daily, and to stick to unrefined food. I am an organic gardener in the summer and looking forward to growing my own spinach and tomatoes again. It costs a LOT MORE to eat right.

    Doesn't hurt to eat healthy
    Linda, I really don't believe cancer is caused by poor diet.If that were true a whole segment of the population in "starving" countries would be dead from cancer. Some of it might be caused by added chemicals, artificial sweetners, and hormones in dairy products and meats but so many people say they got cancer even though they ate a healthy diet and exercised regularly. I was one of them. That doesn't mean a person should quit eating healthy and excercising. Some health problems are caused by poor diet. So some of those a person can control. The fact is, a person feels BETTER when they live a relatively healthy life. I know I do. I'm not extreme, however. I didn't realize steriods given during chemo change one's mood. Maybe that explains some things.......But I did have a huge appetite and incessant cravings for certain foods. Speaking of chemo-brain, just today a lady (I work with the public so I don't really know her) asked me how I have been doing since the treatments, about the side-effects, etc. I told her May will be 2 years but I still have chemo-brain. She said, "some of that is getting older." I don't really think she knew about chemo-brain. I just told her that maybe getting older does not help but I definitely know I have more problems with my brain than before chemo. Looking back I feel abit annoyed at her for saying that but I bet I have said many things to people also in ignorance. Oh well. If you never experienced cancer how would you know anyway?
  • slickwilly
    slickwilly Member Posts: 334 Member

    Hey Blue
    Yikes! What else can I say. I wish I could be there with you and hold your hand or tell you funny jokes when you are going through it all.
    Am glad that you are getting the kidney stone taken out. I understand that those are very painful and can lead to even more trouble. The article will keep until the next time. forgetting just postpones it for a little while. here is a story for you. Really cold outside and I could not find my gloves. Searched everywhere. They are pink (go figure) and cannot be over looked. So off I go to the store to get new ones~fussing the whole way there. Went to the check out line to pay for them~reached in my purse~ up the gloves were in there. The one place I did not look! Hope that this brings a smile to your face. Hugs, Pnktopaz

    Hi Everyone
    Blue, I am sorry about your day and the pending operations. I do wish I could be put out for a while. I found that after my operations I would wake up and feel like a million bucks. As I am always fighting pain I just don't sleep well. Linda, I learned to hate my Predisone as my wife kept yelling at me. I would spend 3 days wound up and making noise in our attached garage. And as a friend once said "you could lick the ketchup off the door of the fridge". I gained 15 lbs during my cancer. I like your diet but agree with your husband. Its hard to beat a good hamburger. We will plant a garden again this summer. A co-worker bought two green peppers that were in a crate marked Mexico. They were put in his micorwave and sparks started flying all over. After another trip to the store and the same thing happened. So he bought some American peppers and they cooked just fine. The store manager took the peppers off the shelf. It makes a person wonder about heavy metal poisoning hey! I love my garden, I love my garden. And also the berries and apples my wife spends all summer picking. Bless you all Slickwilly
  • blueroses
    blueroses Member Posts: 524

    Hi Everyone
    Blue, I am sorry about your day and the pending operations. I do wish I could be put out for a while. I found that after my operations I would wake up and feel like a million bucks. As I am always fighting pain I just don't sleep well. Linda, I learned to hate my Predisone as my wife kept yelling at me. I would spend 3 days wound up and making noise in our attached garage. And as a friend once said "you could lick the ketchup off the door of the fridge". I gained 15 lbs during my cancer. I like your diet but agree with your husband. Its hard to beat a good hamburger. We will plant a garden again this summer. A co-worker bought two green peppers that were in a crate marked Mexico. They were put in his micorwave and sparks started flying all over. After another trip to the store and the same thing happened. So he bought some American peppers and they cooked just fine. The store manager took the peppers off the shelf. It makes a person wonder about heavy metal poisoning hey! I love my garden, I love my garden. And also the berries and apples my wife spends all summer picking. Bless you all Slickwilly

    Metallic Peppers? YIKES.
    Wow Slick that's a scarey story about the peppers. You should have gone back though and taken some, froze them and used them on the 4th of July for fireworks - cheaper than the real thing betcha - not as dangerous to your health either, lol. Basically we were created to eat what was around us locally is my thought on the subject of food and health. I read somewhere that we should actually only eat local for a certain amount of miles around us, produce, meat and milk products. Makes sense since way back in the day before cars and other modes of transportation you had to walk to your food sources and that would only be a certain distance from where you lived so you had to eat local. I think that we have gotten much too far away from nature to be truly healthy. God had a good plan but we humans knew better - uh huh. Anywho that's my little take on the subject. Blessings, Blueroses.